1. < Sarcoma
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Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Interested in more discussions like this? Go to the Sarcoma Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 27, 2018
In reply to @biceto "Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for..." + (show)
@biceto

Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.

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From the National Cancer Institute:
sarcomatoid carcinoma https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcomatoid-carcinoma
"is a type of cancer that looks like a mixture of carcinoma (cancer that begins in the skin or in tissues that line or cover internal organs in the body) and sarcoma (cancer of the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue). The sarcoma-like cells are often spindle cells. Under a microscope, spindle cells look long and slender."

Biceto, sarcomatoid carcinoma may appear in different parts of the body. Do you know what type of sarcomatoid carcinoma your friend has? Lung, larynx?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 27, 2018
In reply to @biceto "Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for..." + (show)
@biceto

Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.

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Hello @biceto

I appreciate your concern for your friend in the UK. It is good to have advocates when you facing serious illnesses, especially those that are rare. Here is some general information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/sarcoma/care-at-mayo-clinic/mac-20351051

Until some other Members join this conversation, please share as you are comfortable doing so, some of your friend's history with this rare form of cancer. Is this a new diagnosis? Any treatment plans in place currently?

I look forward to hearing from you.

Teresa

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Biceto | @biceto | Mar 27, 2018

Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.

REPLY
2 replies
jeffk | @jeffk | Feb 19, 2018
In reply to @deborahe "Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in..." + (show)
@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative "debulking" surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K's and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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Hello Deb, this past Saturday, February 17th was the one year anniversary of having my trach removed. Truly a celebratory day, however it was definitely overshadowed by our grandson's church/school fund raising pancake breakfast. I hope that your speech therapy sessions are having the desired outcome. Sounds like the walking should also help with your breathing. Wishing you continued success on the journey to redefining the new normal as they call it!

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fredscape | @fredscape | Feb 13, 2018
In reply to @fredscape "I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm..." + (show)
@fredscape

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

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I am definitely getting a combination Of Lartruvo and Doxorubicin. I am being treated at the Hematology and Oncology Center in Charleston, South Carolina by Dr. David Ellison. Have you heard any thing about the Lartruvo? I think I may be the second person they've tried it on here. They tell me she is ten years older than me (I'm 65) and has done well. Anyway, just groping for information.

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fredscape | @fredscape | Feb 10, 2018
In reply to @fredscape "I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm..." + (show)
@fredscape

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

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Not sure about the doxorubicin but I think so. Side effects not horrible yet. Nausea and fatigue

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 10, 2018
In reply to @fredscape "I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm..." + (show)
@fredscape

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

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Welcome to Connect, Fredscape.
I'm tagging @udderplace @kathythornjohnson and @godsgotthis who also have a diagnosis of liposarcoma to join the conversation. @udderplace also started this discussion to talk about chemo treatment with Gemzar.

- Liposarcoma: Starting treatment with Gemzar https://connect.mayoclinic.org/discussion/information-on-liposarcoma/

It's tough when cancer comes back. I understand that Lartruvo (olaratumab) was recently approved by the FDA and now offers an alternative for people for whom surgery and radiation are not an option. Are you getting a combination with doxorubicin? How are the side effects?

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fredscape | @fredscape | Feb 9, 2018

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21, 2018
In reply to @zaruhi "Hello my name is Zaruhi and I am a 33 year old female. I went into..." + (show)
@zaruhi

Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn't conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I'm supposed to get both chemo and radiation. I'm really afraid. Sorry I don't know what else to say.

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Welcome to Connect, Superdave.
@zaruhi, how are you doing? Have you started chemo and radiation?

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superdave | @superdave | Jan 20, 2018
In reply to @zaruhi "Hello my name is Zaruhi and I am a 33 year old female. I went into..." + (show)
@zaruhi

Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn't conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I'm supposed to get both chemo and radiation. I'm really afraid. Sorry I don't know what else to say.

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I'm sorry you have to go through this. It is scary. I have been dealing with a similar situation. First a little bit about about myself. I'm a 41 year old married father of 4. I'm a physician (pathologist) who did my training at the Mayo Clinic. In 2015 I was diagnosed with a synovial sarcoma that was growing on my diaphragm. I went through 5 rounds of chemotherapy and surgery. I was doing well until this last summer when I had a reoccurrance. I went through another surgery and 4 rounds of chemo. Now I'm recovering and there is no sign of cancer (let's hope it stays that way).

You'll be amazed at what you can handle. I found that with help of family and friends I was able to get through some very tough times.

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